Psychology in Diabetes Care, 2nd Ed, Part 8: Diabetes in Adolescents

There is no widely accepted precise definition of what adolescence is, but it is commonly referred to as the transitional period between childhood and adulthood.

As this is not the place to discuss the social, cultural, historical or political construction of adolescence, for the purposes of this chapter adolescence is taken as referring to young people between 12 and 20 years old, thereby mapping fairly closely the teenage years.

Whatever definition we use, the adolescent years are clearly a period of rapid change and development. Children progress through the education system to compete with adults for resources and jobs. This is accompanied by continued cognitive development, enabling young people to think in increasingly abstract ways and to become less receptive to authority figures. As they compete for jobs or higher education places, teenagers are attempting to establish their identity and lifestyle, and quite early on have to make choices that will affect their long term career aspirations. Adolescents spend increasing amounts of time away from home, and their leisure activities become less structured, with ever diminishing adult supervision or involvement. It is during this period that we learn how to form and maintain friendships and close intimate relationships with our peers. With puberty comes the adjustment to a changing body and interest in sexual relationships. The timing of puberty can also have a substantial impact on adolescent development, with early or late onset of puberty having markedly different effects on boys’ and girls’ psycho-social development. With all these changes occurring in a relatively short period, probably ending with the adoption of lifestyles that will endure through adulthood, it would seem reasonable to suggest that adolescence provides us with the opportunity of having a lasting and significant impact on the health and well-being of individuals.

Adolescence is a particularly critical time for young people with diabetes. Whether diagnosed in childhood or adolescence, it is during the adolescent years that the individual learns to take increasing responsibility for the management of their diabetes.1-3 As they start to integrate their diabetes management tasks into their emerging lifestyles, teenagers directly experience the relationship between their actions and blood glucose tests, if they do any. This will in turn influence their beliefs about diabetes, its treatment and how they will manage it. Therefore these will be formative years in the development of such beliefs, which, once fully integrated and accepted by the young person, may prove difficult to change.

Adolescence is also frequently seen as a time to change and intensify insulin regimens. Whether this is in response to trying to make diabetes management more flexible to fit with the young person’s lifestyle, or in an attempt to improve diabetes control, intensifying regimens adds to the demands of diabetes, especially during the adolescent years. The additional pressures to test blood glucose and adjust insulin can mean intensification will result in increasing intrusiveness making the social life of young people even more difficult.

Research consistently demonstrates that during adolescence there is a marked decline in metabolic control.4-6 Although this decline is partly attributable to the physiological changes occurring at this time,7,8 the decline in self-care seen during adolescence is of equal if not greater importance.9-11 This deterioration is particularly marked and of concern in the area of insulin administration. Although self-report data suggested that missed insulin injections were common, the pharmacy record data from the DARTS database demonstrates that about 28 per cent of young adults do not even obtain sufficient insulin to meet their prescribed regimen.11

In addition to insufficient insulin resulting in hyperglycemia, repeated failure to inject insulin can result in diabetic ketoacidosis (DKA). Post-diagnosis recurrent DKA, in the absence of other medical complications, is commonly caused by low levels of insulin administration,12 with the incidence of recurrent DKA peaking during adolescence.13

As if these diabetes burdens were not enough, for many young people especially those diagnosed early in life, their annual review will begin to include screening for the complications of diabetes, adding to their anxieties and emotional burden. It is not surprising then that young people are more likely to drop out of the system and not attend outpatient clinics.14,15 Furthermore, with the emphasis on monitoring diet and weight, young people, and in particular young females, are at a greater risk of developing disordered eating patterns,16,17 which may lead to clinical eating disorders.

This brief summary makes it clear that adolescents with diabetes are in the unenviable position of facing the same developmental tasks and demands as other young people, in addition to learning to manage and live with their diabetes. This poses healthcare professionals and parents with numerous challenges as they seek to maintain or improve diabetes control through this transitional phase, without depriving young people of the appropriate age-related experiences to enable development and growth.

This complex array of diabetes and general developmental issues has generated a wealth of literature on the psychological aspects of pediatric chronic illness, and diabetes in particular. However, the literature has seen a marked change in emphasis in recent years, from descriptive research to more intervention based research. In 2000, the National Health Service Health Technology Assessment program published a systematic review of psycho-educational interventions for adolescents.18 The results of this review data indicated that there were numerous methodological shortcomings in the literature. Only one-half of the interventions were theoretically guided; over one-half of the studies used GHb as an outcome, when it is more appropriate to evaluate the effectiveness of a behavioral intervention in terms of the behaviors it is designed to impact. Follow-up assessments were relatively rare but, to examine maintenance, the long term effectiveness of these interventions needs to be evaluated. Sample sizes were typically small and rarely based on power analyses; effects of ethnicity and socioeconomic status were not examined and cost-effectiveness issues were not addressed.19 The review identified only a relatively small number of interventions that were reported in sufficient detail to permit the calculation of effect sizes. However, the meta-analysis indicated that,20 overall, these interventions were effective in the short term and that theoretically based interventions were more effective than a theoretical interventions. Since this review and meta-analysis, psycho-educational interventions for adolescents have increased in frequency and both theoretical and empirical rigor. For the purposes of this chapter, the interventions in this review and more recent work can be grouped into three main types, those specifically targeting individuals with persistent poor glycemic control as evidenced by recurrent ketoacidosis, family-based interventions and those focused on the individual adolescent, rather than the family.